Trying to conceive with Endo stage 4 and worried about my chances

I've never posted anything, anywhere before, but I just need to talk. Sorry if this is an essay but I don't know what to leave out and what to include!

I was diagnosed 3 years ago with stage 4 Endo, after first suspecting I had it over 10 years ago. I was told that I would most likely have troubles conceiving, but that surgery to remove could cause scarring that might also affect my fertility (a concern of mine) so I decided to just leave it while I could (I was very lucky with the Mirena coil, with that and going vegan I've had very few symptoms for the last few years).

Anyway, my husband (a few years younger than me) was not ready for kids yet - I wasn't sure I was but I knew it could be a long process - and we've negotiated an eventual date to have the coil out (2 months ago) knowing that if it happens straight away it's scary but a blessing, and if it doesn't we have plenty of time to have treatment before I get too old.

Well, I know this sounds stupid, but I've had this fertility question/worry at the back of my head for years (even before my diagnosis) and now that it's actually happening, and we're trying, it's all I can think about. I know I need to be relaxed, and I am for the most part, but at the same time, I'm so scared that it might not happen for us. My GP once told me that the Mirena was regulating my hormones and that actually my best chance to conceive was just after I had it removed. Well, now all I can think is, if it doesn't happen straight away, that's my best chance gone and it probably won't happen.

I'm struggling to put into words exactly how this all makes me feel - like a giant washing machine full of emotions instead of clothes and on a spin cycle! I'm getting annoyed at myself for getting worked up or feeling negative emotions because that won't help, and yet when I feel positive, excited and hopeful I'm just setting myself up for a fall when tests turn up negative or logic sets in. And I wish we'd started sooner. I've never had so much as a pregnancy scare in my entire life, despite being young and careless at times. My husband knows all of this, and yet we held back and I'm worried that's reduced my chances even more.

I don't know what I'm looking for - I think I just needed to talk - but has anyone else had this or can anyone give me inspiration, advice or hope? Thanks

[Hidden]

Hi Hun, I know it's easier said than done but please try not to think too far ahead & see how trying to fall pregnant goes for a while. I was diagnosed with stage 4 Endometriosis aged 33 after years of trying & being fobbed off & felt as if my chance to be a mum was long gone. I finally fell pregnant naturally at 38 then again at 40 but both pregnancies ended in missed miscarriages. Due to my age & time not being on my side with regards to waiting to see if I could fall pregnant again we decided to have IVF the start of the year & I'm nearly 38 weeks pregnant now. I know we all just want things to happen naturally for us but wanted to give you hope that even if you need help fertility wise down the line, Endometriosis can be beaten! Wishing you the very best of luck. X

[Hidden in reply to Hidden]

Congratulations, that's great news! And thank you, it's good to be reminded that it can happen. Maybe I'm just impatient

[Hessyh]

Hi I totally understand I already have a little girl who I conceived when had endo but now it’s progressed to stage 4 and I been trying for 4 years. It’s hard because I’m little girl isn’t my partners and he has no children, although he loves her like a dad would. I had surgery and the 6 cycles of clomid but no luck. Try surgery and clomid as I have ready that lots of people are very successful and if u don’t have children already you will get ivf free, wasn’t an option for us x

[mayk]

Hi Kimm16,

I was diagnosed with Stage 4 endo and had a laparoscopy. Was able to fall pregnant naturally 3 months later. Am currently 32 weeks. I was told you have a better chance at getting pregnant after having endo removed. I was advised by my fertility specialist to have a laparoscopy before trying IVF. There is always the chance that endo may return after having it removed.

I am 37, and wished we had tried earlier to find out why as I didn't have the normal symptoms.

It is quite emotional. You'll know what to do. Good luck.

[Belles24 in reply to mayk]

Thank you Mayk for sharing your story, it's really built me up today and given me hope! Had last lap 6 months ago but the pain is back just as I was about to look into starting IVF as a single person. Reading your story has helped me see that maybe having another lap first wouldn't be the end of the world. Thank you xx

[Rehanat]

Hi - i conceived my first really wuickly but my 2nd took almost 3yrs as i was diagnosed with stage 4 endo with endometriomas on both ovaries. I tried clomid which only aggravated the endo so stopped and i also had a failed cycle of ivf. I ended up concieving naturally after we stopped stressing about it. It can and it will happen for u but u need to be positive xx

[Tanni]

Hi Kim,

I hope it all goes well when you have the coil removed, it can be a little painful when it’s removed but I found the pain went quite quickly.

I am 28 years old and when I was 21 I found out I had severe endometriosis which at the time the consultant told me I needed to start trying for children right then as there was a very slim chance I would be able to have them later in life...well this freaked me out (and my partner!) as we were just about to buy our first home together and we were not ready for that step yet especially being only 21....although for the two years previous to that we were not safe when having sex together and never had a scare, but I did have very random periods where I would have bleeding every couple of days as well as a normal period (that was never regular).

Well 6.5 years later I’ve had four surgeries for endometriosis and two coils in that time. The last surgery was September 2017 where cysts were cut out of my ovaries as I didn’t want them to be drained due to much higher risk of coming back as I couldn’t face more surgery again if they did.

Roll onto August 2018 I had been getting pains again and was concerned that it was the coil maybe causing it or cysts. I went for an ultrasound and that showed functional cysts and a few small fluid cysts but I was told nothing to be worried about.

My partner and I sat down one evening and discussed what we wanted in life, we both had said all these years that children wasn’t going to be in the picture - more so because we never believed we could!!...but we decided when I had my gynae appointment I would ask for my coil to be removed as we both wanted to see if we actually could create a family together, that was the end of September.

We have now been trying for just over two months and I’m not pregnant yet but there is time and hope still. I too believe that I needed to fall pregnant straight away to give us the best chance.

I started acupuncture to help regulate my cycle and help with pain a few weeks after having the coil removed and I think that has helped me have a period as before that was removed I only got a small amount of bleeding shortly after having the coil removed - everything I was reading online was saying they had periods straight away so I was panicked that my body was being slow at righting itself of the hormones so acupuncture to me has helped kick start it.

I believe that everything happens for a reason in life, we are hopefully that one day we will have a family together but if it doesn’t then we still have each other and all of our family’s....plus we have plenty of nieces and nephews to keep us on our toes as we are both from a family of four!

I really hope when you have the coil removed you are not in too much pain, I haven’t wanted to take stronger pain relief other than paracetamol and ibuprofen just in case we do fall pregnant and I don’t want to put the baby at risk but I’ve managed ok with a hot water bottle and resting - for once I am listening to my body if it says it’s tried I actually rest!

xXx

[Belles24 in reply to Tanni]

Tanni your hopeful attitude and energy is exactly what I needed today, thank you for sharing :-). If you wanted to read my story I've responded on this thread. Wishing you all the luck in the world xx

[Belles24]

Hi Kimm16 and everyone else on this thread, I just want to start by saying thank you for sharing. I was having a little moment feeling very overwhelmed and alone, but reading this thread really helped.

Kimm16 how are you getting on?

For years I didn't dare to dream, and this led to a lot of emotional pain but I've been doing reading and have read that positive visualisation can help. Now I have little moments where I sit and imagine being pregnant and imagine my life with a beautiful baby and it makes me feel happy. I figure, even if I try and it doesn't work, at least I'm happier in these moments than when I was defeated and hopeless. I think to myself that this is just the beginning so if one stage doesn't work there'll be another and one way or another through IUI, IVF or adoption I will have my child.

It also helps to read success stories so sometimes i search those out, or think of the people I know with endo who have successfully become mum's - there are quite a few! Lovely to read about more on this thread!

I was diagnosed with endometriosis 4 years ago but the consultant, I later found out, wasn't a endo specialist. They removed a 12cm cyst and endo and never told me about stages or how this illness would affect my life, and were very dismissive and belittling about my questions and concerns. Me and my partner were about to start trying post lap as advised by dr; this was my partners suggestion as was going out and picking an engagement ring. However when he found out I needed a 2nd op as endo was back he left me. I felt like I lost my last chance at being a mum as well as my bestfriend, home and job (we worked together).

My drs were very dismissive and told me I was young so not to worry and that endo isn't a 'big deal' they seemed to dodge any questions. This led me to believe I was going crazy for the years to follow and that I was imagining my symptoms of chronic fatigue, nausea and leg and back pain, and I even thought I had ME as they never told me that endo can cause this. During these years my urge to become a mum seemed to grow stronger whilst my faith that it would happen depleted leading to years of depression.

Ive now addressed my depression, and am feeling stronger and more focussed. I did more reading on endo and also moved finding an amazing endo consultant in my area who did an extensive op on 6/8/18. They removed lots of nasty endo and diagnosed me with stage 4 endo and adenomyosis. Dr also told me if I want a chance of having a child I need to start now. Problem is, I'm single. After much deliberation, saving, begging and borrowing I've decided to go it alone and start ivf privately, but theres a new spanner in the works, they think the endo is back as the pain has come back severely in lower ab the last few weeks.

It definitely all is a roller coaster and there are times where the unfairness of it all gets to me, but I feel, in those moments, imagining the end goal of me holding my child are more important than ever. We must try, as hard as it is, to be kind to ourselves, take one step at a time, and have hope that we'll get there in the end.

Thinking of you xxx

[ccsmith]

I remember all those horrid feelings of what ifs, maybes and devastation every time I came on. Especially as my endo was so bad my periods were horrendous. We tried for 3 years and then saw a fertility doctor who said I was too fat and it wasn’t endo (I wasn’t diagnosed at the time even though I was convinced I had it as worked as a nurse on a gynae ward). She was horrid and did nothing for a year and just made me lose weight ( I wasn’t that overweight either!!. I fortunately saw a locum one day who said I wasn’t fat and needed IVF. My IVF appointment was such a devastating day as she did a scan on me and said I had stage 4 endo with a massive endometrioma. I remember the feeling like a rug being pulled from under my feet! I gave up BUT found out I pregnant 3 weeks later! We recon I was just pregnant when I went for my IVF appointment! It’s amazing when you think all hope has gone then you get a ray of light! I have a beautiful 7 year old now and she’s more treasured as I had a late ruptured ectopic 3 years later. See a endo doctor if you don’t fall within 6 months (my endo dr told me this after my little girl was born to stop endo growing too much). I stupidly said no to a laparoscopy after my little girl was born as thought all was good but sadly had adhesions on my ovary and tubes which is the reason for my ectopic - I will never forgive myself for that.

Please don’t put too much pressure on yourself as I fell pregnant twice when I thought I couldn’t! Enjoy trying and let nature decide at the moment. See your gp at 6 months and say you need to see an endo dr not fertility. They then can do a lap and sort out what could be stopping you fall pregnant.

Never give up there’s lots out there and as you said you have time.

Best wishes xx

[tiger-cub]

I have stage 3 endo have been suffering for 15 years now . I had 6 ivf cycles . 2 miscarriage and 1 ectopic. I have been really devastated. Now I’m moving forward and thinking of donor cycle . So there’s no fixed answers . All we can do is try . and remember this way or that way we will complete our family.